Faces of Lyme: Kristin's Story
Before I got sick, I was a social butterfly and an athlete full of energy. I was not someone who could ever stay still. I loved to travel anywhere with an ocean and enjoyed windsurfing and swimming like a fish. While getting my master's degree at night, I worked full time with enough energy to still lead a very active social life. I had an exciting career working with children with disabilities in the public school system. My goal was to work with these children on gaining as much independence as possible. Ironic, that I am the one now applying for disability.
During the summer of 2007, I woke up and the whole right side of my body from the neck down was paralyzed. After going to the emergency room I was given an initial antibiotic treatment for Lyme Disease. I had been working at a summer camp in the woods at the time. I became sick and also suffered with flu-like symptoms. I did not know much about Lyme Disease but since I had a family friend who had Lyme, I asked for his doctor's name. I was treated by this infectious disease doctor and my symptoms seemed to go away for a year.
In October of 2008, I began having numbness and tingling in my extremities as well as muscle weakness and unending fatigue. After further evaluation, I tested positive for HHV-6 (the precursor to Chronic Fatigue Syndrome) and Epstein Barr Virus (mononucleosis). My adrenal glands were shot and were not producing enough cortisol and my thyroid was found to be underactive. My immune system was struggling, as evidenced by my CD57 test.
The active life I once enjoyed turned into a daily struggle for normalcy. There are days I'm so fatigued that I do not leave bed at all. Most days though, my muscles feel so heavy and weak that I cannot take a shower, walk up and down stairs, or safely drive. My independence continued to decline and I realized I could no longer live independently. I moved in with my boyfriend and out of my second floor apartment in August. What a relief to have someone to help take care of me, and the food shopping, cooking and errands.
Besides the overwhelming fatigue and muscle weakness, my day can be wrought with headaches, numbness and tingling in my extremities, buzzing in my brain, body aches, neck and back pain, depression, anxiety, restless leg and insomnia. Most challenging for me has been the ups and downs of this illness. I do not know from day to day what symptoms I will be presented with. Being a "planner" by nature, this has been hard. I thought at 36 years old I would be planning my wedding or even a few kids!
I have tried to continue on as "normal" as possible. For three years I tried to drag myself to work. I was so weak and exhausted that I had little energy for anything else. Slowly, the social life and many friendships I enjoyed began to disappear. My identity was slowly being taken away piece by piece. I missed so many activities, I missed so much work; my life had completely changed and it was out of my control.
Despite my best effort, I fell into a deep depression and just wanted to die. How could my life be so different now? How did someone cope with such a thing? No one could tell me that I would get better. I was in denial. "This can't be my life, I'd rather die than live like this," I thought. In December of 2009, my family checked me into a psychiatric ward in fear that I was going to take my life. I had contemplated it so many times recently, but this was my rock bottom.
In June 2011, I was let go from my job due to excessive absences. I had worked for this school system for 6 years and was devastated. I had never missed a day of work until I became sick. I took total pride in the work I did. It was meaningful and I loved making a difference in these children's lives. I begged them to reconsider and tried to convince them I would get better. The thing is after 3 years, I didn't know myself if I would. "Maybe this was as good as it gets," I thought. My life had turned into a vicious cycle of disappointment, grief, and frustration.
I continue treatment for Lyme Disease, Chronic Fatigue Syndrome, underactive thryroid, low cortisol, depression and anxiety. My doctors just discovered that I also suffer from a deadly Lyme co-infection called Anaplasmosis. I have spent thousands of dollars out of pocket for co-payments, and prescriptions for conventional treatments. I have spent the remainder of my savings for alternative treatments such as IV Vitamin C treatments, chiropractic, acupuncture, herbal remedies and nutritional supplements. I have realized that there is nothing as precious as one's health and have spared no expense in trying to get better.
Through my employer, I was able to elect COBRA to extend my current health benefits. However, at $641.00 per month, it is challenging to keep up with such high payments while unemployed. I am anxious about what will happen when my COBRA benefits run out? How will I pay my bills? How will I live?
The decline of my health and independence has been a death of sorts. However, I try to keep a positive outlook and hope to receive some assistance during this challenging time so that I may continue my medical treatment, and one day resume a normal way of life.
--Written by Kristin
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